Toxic Positivity - what are you not allowed to say about dementia?

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The idea of the need for positive thinking (and banning negativity) is not new, but its effect on the dementia community has recently become utterly toxic.  As Alexander Kjerulf said more than five years ago “Positive thinking is a poorly defined concept which at its most extreme says that, in every situation, you can choose your own mood and your own reactions… you can always choose a positive attitude.”  Kjerulf makes it clear that you can “think positive” with good results in non-life threatening situations.  Missed the bus?  Be cheerful. It’s a chance to get a coffee. However, you need to rein it in. When there is a serious problem, enforced positivity shuts up dissenting voices, and buries serious problems. 

The “living well with dementia” idea is a “positive” idea that is defended ferociously, with no concern for the personal and political consequences. I think it is an example of toxic positivity.  I’ve recently been so attacked for questioning it that I’ve even had sympathy notes from strangers who agree with me, but can’t afford to go public.

Telling someone diagnosed with dementia or their loved ones that they should think more positively is condescending and trivialising their situation.  The concept of “biological authenticity” concerns how your body responds to stress.  Your physiology is subjected to low grade, repetitive, trauma if you must pretend that things are fine when they aren’t.  It is harmful.  Having to be positive makes people ill. I can see the post traumatic stress disorder developing in the carers, from diagnosis all the way to the funeral.

I’m told time and again by carers that the “positive thinking” movement implies that if you’re unhappy, you’ve only got yourself to blame.  For the person with dementia, not only are you shattered, but it’s your own fault because of your lifestyle.  Positive thinking is very like “victim blaming.”  Except you’re not allowed to say “victim” in relation to dementia because that’s too negative.  The relief from expression of feelings through language is continuously suppressed by toxic positivity.  

Another danger is this. Giving the impression that positivity makes a vital difference means people take dementia less seriously.  Why bother to support serious research, if we’re constantly told you can fix dementia with a singing session, spending time with children or petting a dog? All these things may be uplifting for anyone.  But be careful.   Presenting them as “dementia therapy” suppresses the real truth that dementia is an unpleasant, progressive, acquired, incurable brain disease.  Please don’t take everyone’s eye off the real issues, like the inequity of the financial cost of dementia care for families or the lack of practical information that could help people – just because these issues are negative.    

If you have a diagnosis of dementia and have been indoctrinated by others into the toxic positivity movement, it may seem to give you a purpose in life at a crucial moment.  If you have the skills and capacity to be able to maintain a high profile, your role is now to defend positivity with everything in your power.  An industry has grown out of this positivity.  You are at the heart of a machine that is orchestrated by advocacy organisations and governments.  Over time, I’ve noted, if you decide by yourself to be more realistic, that will be seen as negative and you’ll get dropped like a stone. When you’re angry and afraid you’re not promoted.  You will be accused of destroying hope for everyone else, as if your feeling is not authentic. 

Personally, as a dementia studies professor, I too get pressure.  It only needs one person with a diagnosis of dementia on social media to disagree with me, and I get hammered.  I realise how close I am to the heart of it when I get passive aggressive messages like “This is making me sad, so I’m not going to engage anymore.”   Rather than sad, if you are affected by dementia, you might be white-heat angry, to discover you’re being coached with the idea that being positive no matter how you feel is good for your health. 

My expertise, because I don’t personally have dementia is thoroughly disparaged if I challenge. I get insulted as a “so-called” expert.  Other academic or practice experts join in with the idea that one person with dementia trumps any professor.  They’re possibly afraid of upsetting the positivity movement. What power, to get professionals and experts to undermine themselves through political correctness! Who would pay to train or employ a nurse, an occupational therapist, a doctor or a researcher if just being positive can do the job? If you don’t value your evidence based knowledge and education, no one else will.

But here’s the news. I’m not damaged by insults.  I’m too positive.  This is not mindless positive thinking but a clear and present drive to warn people that it is OK to be not OK, and you can trust some of the people who don’t have dementia who have expertise to help.  And I have to say that people with dementia in the public sphere can be contradicted.  Their representative capacity can be challenged.  If no one challenges you ever, you are just being patronised.  And if you have dementia, however positive you are, I won’t patronise you, but engage with you as an equal.  That’s the antidote to this sort of toxin.